adhd

The article below was written over a year ago. I would like to say things have improved in the world but the most I can say is that things have improved in my daughter’s world.

She spoke up to us, not for the first time, about being bullied and attacked at school so we’re keeping her at home. Sometimes what’s best for our kids isn’t the easiest option but doing what’s right rarely is the smoothest route in life. I hope my kids see monumental changes in their lifetime of better mental healthcare, equal rights created and protected, and an end to sexual violence.

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“Mama, why am I so different?”

For some reason I wasn’t expecting this question, not yet, not from my six year old. How can I explain to her and convince her of what I see and believe about her when everyone around her finds fault with her for those same reasons? She speaks softly and melodically. They tell her to speak up. She is achingly vulnerable without any guile and it terrifies me every day that she’ll be hurt by someone. They think it’s wonderful that she’s compliant to authority.

You see, she’s every teacher’s dream. A quiet kid who listens to directions and does everything she can to please them and doesn’t question authority. Yet she’s also the kid that gets forgotten, mistreated, fears speaking out, bullied, misunderstood, and is bewildered by the malice of others.

She “can’t find the words” and hits herself, “I’m a bad girl. I can’t get it right.”

She cries easily. Her feelings are often hurt. She feels so intensely the emotions of others around her that her stomach pains her with anxiety. This is autism in girls. This is what PTSD looks like in kids who have been sexually abused.

I love my daughter and accept everything about her but that doesn’t mean I love her autism, or my son’s, or my husband’s. Watching someone you love struggle to navigate the world is never a pleasant experience when it ends in tears or explosive tantrums. There are days where I feel like an incompetent ringmaster running from lions. Please hold my hat.

My least favorite moment recently was when a therapist asked, in front of my very verbal daughter with sensitive hearing, “How did you explain to her she was autistic?”

Sometimes I wish I could pause the world for my children so I could ream someone without them hearing my obscenities. I managed to bite on the inside of my cheek and ask, “Good question, she can hear you so why don’t you ask her?”

Nora smiled good-naturedly, waiting patiently, as the woman blanched in embarrassment. We continued the appointment and I suffered through yet another barrage of convince-us-your-daughter-is-autistic. It’s a great game, it only costs hundreds of dollars an hour, no one wins, and it always ends with, “Oh, yeah, she is…”

Diagnosis isn’t a one shot deal. It’s a process where you try to convince people of what you’ve observed and they test your ability to stay calm as you struggle to understand what the !$#% is going on with your kid. We’re at the tail end now and facing more therapy as we try to grasp at what we can do to make her life easier.

Accepting your children’s autism has little to do with yourself and more to do with what choices you make for them. Constantly debating when to get out of their way and when to push, when to go mama bear on their behalf, and when to let them struggle. I’ve made mistakes. I’ll make more mistakes. I can only hope my kids know how much I love them. Even if I’m the mom that says !$#% a lot.

“Mama, why am I so different?”

I bit back tears, hugged her, and looked her in the eye, “Because you’re wonderful.”

I took a deep breath for the next part, “You know how Owen and Papa think differently than others?”

She nodded and looked down at her lap. I made a mental note to myself as I noticed she was picking at her hands again and the skin on her lips. I would need to tell the doctor. I took her chin gently and kissed her cheek.

“You think differently too and that’s a good thing.”

——————-

It’s been a year since that moment. We’ve since found a Psychologist and clinic that specialize in helping girls on the spectrum and supporting them with processing trauma. Our neighborhood school refused to acknowledge any of the medical diagnoses or recommendations so now we’re on a new adventure of finding what works for our kids. The road is bumpy but the journey is never boring.

“Am I autistic?”
“Yes, honey,” I push a lock of hair behind her ear and watch the emotions flick across her face before she smiles knowingly, “Are you autistic?”
“Nope.”
“Can you tell me what it means again?”
“Sure.”
“Can you tell the other kids at Girl Scouts?”

I was stunned, proud, and bewildered yet again by this kid. This girl that never ceases to amaze me with her kindness, sensitivity, thoughtfulness, vulnerability, and, yes, her many wounds from the mistreatment of others. She desperately wants to fit in and be accepted yet many days this world doesn’t seem to be meant for her and it goes out of its way to show her so.

We watched a video recently, Amazing Things Happen. It popped up as a recommendation in my YouTube feed and my faith in the internet was restored. What a fantastic piece of work and a way to explain autism to kids, not only about themselves, but to others that want to understand how it feels. The first time we watched it she turned to me and said, “Can we watch it again?”

After the second time, she asked, “Can we show this to the other kids?”
“Yeah, is it accurate? Is this how you feel?”
She hugged me and whispered into my body, “It’s how I feel all the time.”

I cried not because I felt pity for her or any other kid that experiences the world as she does. I cried, like so many days, because I don’t see the world as she does and I struggle to understand how or to protect from the people that would abuse her because of this. What she senses eludes me at times and I’m trying to help someone that doesn’t need help but for the world to stop judging and imposing their expectations on her. To just stop. Stop being so loud, so demanding, so imposing, so much of everything.

Many have shared with me once that they’re offended by the puzzle piece symbol. The Autism Speaks rainbow puzzle piece has become ubiquitous with awareness around autism but the symbol itself has a negative connotation of implying that a person with autism is a “puzzle” to be solved, to be cured. This negative perception is only heightened by its origin of Autism Speaks creating its use seeing that they have come under fire from the society of autism for only investing towards a cure. A contentious outlook from those that believe autism is not a disease or disorder requiring a cure.

It’s unfortunate that so many parents use the puzzle symbol with wholly good intentions to represent the struggles that their children face and I understand why they identify with its use. They want to belong to a movement of awareness and for that I don’t blame or judge them. But, for me, I prefer the rainbow infinity symbol that represents neurodiversity and the acceptance of autism. Yet the use of either symbol doesn’t offend me or change my opinion towards the subject of autism or the people I love that are diagnosed. To me, it’s undeniably a large part of who they are and a physiological difference they have from others; however, it is only one aspect of them and not their entire identity.

So how do you explain all of that in terms that a neurotypical, average kid can understand? How do you create an activity analogous to autism to illustrate how autism feels to a child?

Well, that is exactly what we’ve undertaken these past two weeks. We’ve been preparing a presentation for my daughter’s Girl Scout troop and practicing answering questions that might come up. As we were eating lunch together, I asked her if she wanted to watch the video again today. She said yes and we watched it companionably in silence. It ended and I asked, like I do every time now, “Again?”

She smiled and said, “Yes,” with a giggle.

I hesitated and asked, “Nora, what does it feel like to be autistic?”

My throat tightened and I secretly hoped that she would share with me and not be upset with my question. That her feelings weren’t hurt by me pushing and prying a little further so that she would let me in to her world. Yet again, I was astounded by her insight that always seems to come unexpectedly and at an angle I could never predict.

As a parent, your expectations about your life change the moment you realize that you’re bringing another life into the world that will be dependent upon you. Then your child is diagnosed as special needs and that additional responsibility shifts your expectations yet again. The word “accommodate” gains a different definition with the weight of its legal ramifications and societal implications. It denotes battles with educators. It signifies the appeal you make to family and friends to accept you and your children.

I went through a grieving process with each diagnosis for my son, then husband, then daughter. Each with its own set of revelations, challenges, and eventual adjustment. At first, I struggled to explain to others our circumstances hoping for acceptance in hopes of them staying in our lives. Then I realized that I couldn’t expect them to understand what they didn’t want to acknowledge. I can’t expect them to accommodate us any more than they can expect us to be neurotypical.

After so many last minute cancellations, or change in plans, people stop inviting you. The phone calls stop because they can’t hear you over the meltdowns in the background. They don’t want to deal with your kid but they don’t have the courage to tell you. The diagnosis is a downer to them and they don’t want to hear about it. They maybe see the signs of it in themselves or their kid and don’t want to discuss the topic lest they have to face it in their own life. They don’t believe in the diagnosis of autism. We’ve heard it all and all of it delivered with equal measures of good intentions and ignorance.

“They look normal are you sure they’re autistic?”“Have you tried…?”“Maybe they’ll grow out of it…?”“We’re so sorry. Well, at least they’re not sick…”

The hardest days are the ones where no one is willing to accept them including myself. When I’m not accommodating them by being unreasonable. Now I don’t try to convince others what I know to be the truth. My kids are amazing.

If atypical means intelligent, polite, opinionated, creative, sensitive, and loving then I’ll take it over neurotypical any day. I can only assume that neurotypical should have the negative connotation since most of the kids who’ve abused, bullied, or traumatized my kids are considered “normal” .

With every passing year, I find myself adapting to yet another seismic shift in my perception of my family and struggling to find my footing. Yet the most painful is the trauma my kids have had to suffer. A close second is the loss of those I’ve cared about who won’t accept them. Their lack of accommodation cuts the deepest of all.

The true acceptance I hope for is that anyone who claims to love someone who is neurodiverse will learn enough about their condition to show them that they care and that they will always accommodate them in their heart.

“What does that say Owen?”“It say “happy” like me. Like Owen.”“Wow! That’s great reading, baby!”

I bit back tears of joy and hugged him, “That makes mama so happy to hear that you’re happy.”“Mama, ok?”“Yes, baby, sometimes people cry when they’re happy.”He looked confused and laughed at me, “Mama, silly.”

The conversation spiralled from there when I asked him to wear clothes but despite that I teared up. It was the first time he had said he was “happy” before. It was the first time he had verbally identified his emotions to me.

How many times have we been told that he wouldn’t be the child we have today? How many moments did I despair of not hearing his voice only to wish at moments now that the echolalia would let up for the day? How many of the past predictions am I grateful are wrong and how many of them might still someday be true? There’s so many conflicting emotions in an average day that I find myself spinning and waiting at the center of it all feeling my ears rings from the din.

He’s a happy kid yet a mercurial one. His emotions are always lurking just under the surface like an alligator waiting to lunge or a dolphin surging with joy.

The further we go along the less I understand or feel confident in the research about my kids and the more sure I am of knowing them. I know that they will change the moment I feel I have a grip on the phase they’re in currently. I know that experts are all too often wrong and biased by their own experience. The child they perceive is not the one I know. I know that my kids ache. That it’s possible to be happy in the moment yet carry a deep sadness that is waiting just at the edges like an interloper photo bombing the imaginary picture of your expectations. I see it in their eyes when other kids move away from them and disclude them. I see it when they watch others play and talk themselves out of joining because it’s too loud, too crowded, or too overwhelming.

I ache for them when I see their silent struggle and I rankle when I hear other adults minimize this and their feelings.

“They just need to get out there and play…”“My kid struggles with that too…”“Maybe if you…”“Wow, your kid is REALLY sensitive…”“Yeah, kids sure can be mean…”“Well, you know, everybody seems to have autism nowadays…”“Kids will be kids…”“Isn’t that just how boys are though?”“Temper tantrums, huh? Yeah, mine have them too…”“It must be hard to be like that…”

Yes, it is hard to be like “this”, ignorant stranger. If by “this” you mean that it’s hard to suffer people sharing their unsolicited opinions about my parenting as I try to help my kid through a full-blow sensory meltdown as they hover and ask questions causing my kid the further pain of shaming them in public by drawing attention to their discomfort. Pecking at me with comments and questions like a mosquito feasting at me with abandon. Judging me and my child simultaneously all while trying to be understanding of my plight which implies that you are superior since you have so many nuggets of wisdom to share with me while my child pummels me and screams.

Then there’s my daughter whose meltdowns are typically silent. The agony is in her eyes and stooped posture as other children stare and whisper, push past her, refuse to speak to her, skip over choosing her for games, or demand to know “what’s wrong” with her as she further shuts down. She forces herself to smile, make eye contact even when it hurts, pulls at her hands and lips to stop herself from stimming, and panics over every word and how she enunciates it only to make herself stutter and stammer more pronounced. I see it before I hear her as I go to pick her up from a three hour day camp. I watch her in the backseat as she stares out the window singing along to a musical that she’s memorized by heart.

She’s trying to pass as happy. She desperately wants to be liked and accepted. Yes, just like your child but, no, she is not like yours. Yours is neurotypical, mine is many labels but ultimately judged as atypical by others. To me, they both are as exotic as an undiscovered species stumbled upon in an unknown world and I’m fumbling through their language.

I love them exactly as they are and hope for a day that people stop pressuring them to pass as anything but themselves. Wouldn’t we all love for that? I know that’s where most of the advice and questions come from so I smile, answer candidly, and keep grasping myself at trying to pass as happy even when I am not.

When you’re a parent of a child with autism there’s the additional expectation of being their champion from others. There are moments where I don’t feel strong enough for that mantle. I just want someone to tell me it’s ok to be a mess that day. I just want someone to see me and tell me I’m not alone in feeling that it’s fucked up but that’s probably too much to expect. We’re all trying to pass as happy in our own way.

Cathexis. Definition, the concentration of mental energy on one particular person, idea, or object (especially to an unhealthy degree).

I’d never heard of this word until yesterday. It’s an accurate label for this phase of my life and for the many parents, like myself, that have kids with special needs.

It takes a dedication and level of commitment that no one can prepare you for. Much like the all encompassing weight of stress and worry over their well-being and future if you’re not there to care for them some day. The fear that they’ll never be independent. That your life will end too soon and fall short of the length that they need you. Is there a greater fear than your child dying? For me, yes, the fear that I’ll leave them alone in the world unprepared, or incapable, to care for themselves.

Parenting kids with special needs becomes a vocation that seems only achievable if you throw yourself fully into researching on their behalf and supporting your kid as much as possible. I’m reminded by well meaning, unintentionally insensitive folks, that I really need to focus on “self care” and “get out more”. As if care workers are sprouting on the vine and all of them are willing to watch my kids overnight. Strange, but most sitters don’t want to stay over to watch two kids on the spectrum. One of which has ADHD and likes to wake up throughout the night to sing and scream demands while he rattles his baby gate. Quite often dragging his baby bottle against the bars like an inmate with a tin cup begging for water. Funny that.

Here’s another truth, it’s lonely. Even if you find other parents to kids with special needs that commonality makes it difficult to congregate. It’s difficult enough with small kids to have a conversation but with our kids we might not even make it to the door or we’re occupied with keeping them from running off, melting down, or some combination so maintaining a conversation beyond exchanging names is an accomplishment.

Autism Awareness month, for most of us, is bullshit.

What we need is acceptance. What is required to make that possible is equality.

Acceptance for our kids within families; because, yes, extended families are known for shunning you once your child is diagnosed. I’ve experienced this first hand and have had many arguments to explain that certain stereotypes are untrue and, no, us accommodating your preference of food is not the same as us asking you to make an “accommodation” of putting up baby gates before we visit so our son isn’t injured or elope out the door.

Acceptance in our communities. I can’t count how many times we’ve had to bodily remove our kids from an event or a public space because of others being rude or insensitive and triggering a meltdown that we then couldn’t avoid because of their presence. Insult to injury, those same people want to argue about our parenting while we’re trying to calm our child or, worse, continue to stare and trigger our child as if they’re baiting them into acting out. The mumbled agressions as we leave as the cowards then feel brave enough to comment to our retreating backs.

“If I had a kid like that I wouldn’t take them out of the house.”

“Why don’t you tell that kid to shut up?”

“Some people really need to learn how to parent.”

“That kid just doesn’t belong her.”

“If that was my kid I would spank him.”

We’re limited as to where we can take our children. We know that most places won’t accommodate us and not to expect it even if they have in the past. Many times we’ve had to leave places with our kids in tears because we couldn’t stay. The line was too long and no one would help us, the sound was too high and they wouldn’t turn it down, the restaurant was too busy and we couldn’t get a table in a quiet spot,… We’ve become accustomed to being discriminated against. Our kids have internalized their otherness and anything we say to bolster them up against it is futile to heal the wound of being rejected. We try our best and keep asking for accommodations but every day feels more and more like a gerbil wheel of failure. I’m chasing cheese that I can see and smell but never reach.

Accommodations are a form of acceptance in action. Awareness simply means you know about a condition or topic. Awareness means that you know when discrimination is occurring but acceptance is doing something about it and creating equity for others.

Equality is allowing my child to attend his neighborhood school so he can make friends in his community and be accepted as a member of that community, yet we’ve been turned away not once but twice. I have two separate drop offs and pick ups for my kids every day.

Equality is a place at the table, equity is having a functional chair.

For instance, my daughter’s school has ADA accessible entrances but half of the door buttons are malfunctioned so if you’re wheelchair bound you have to wait for someone to open the door. The school by law is up to code for ADA standards yet they chose to house the children with special needs on the second floor so they have to use an elevator to access their classroom when there’s ample space on the first floor for their class. Yet that would be mean them being visible to other students and part of the daily community. A community that they entered into after most likely a long battle on their parents part because I’ve yet to win that battle for my son who is not allowed to attend the same school as his sister.

Even if I was to get my son into the neighborhood school, they like many others, make it very clear that they do not accept children with special needs. They are aware, they will accommodate them begrudgingly by law, but they do not accept them as equal to all other students. It’s not as if a sign is posted telling them to “go home” but it’s unmistakable when every area of a school is geared towards able students and kids with special needs are excluded.

So often children with special needs are shoved off into inadequate classrooms and corners. Given “sensory corners” to sit in and calm down when they are overwhelmed. The clear message being that it’s their problem, their fault, for being over stimulated not that the class needs to be reminded to keep their volume down or that the space needs to be reconfigured. The child with sensory issues is told to put on headphones and sit in a corner. It sets them apart and reminds them that they are different and unaccepted.

School assemblies and celebrations, a flood of students all talking at once in a high ceiling gym without a single student with special needs or disability in sight. Every week or month appointed for awareness around Developmental Disabilities, Autism, or a physical condition goes unrecognized as children make decorations for other events for more important to the rest of the school to acknowledge like Presidents Day or a “Fun Run”.

The cathexis of my existence is my children. That might seem unhealthy or unwarranted to some. To that I say, do you feel accepted? Do your children fear being excluded at every moment of their life? Do they feel unwanted in their own classroom? Can you leave the house and experience moments as a family, together, without fear of being discriminated against and turned away?

I’ll continue on with my cathexis until all the chairs at the table are functional and every person has a place.

I hear this statement frequently from Owen. It epitomizes his character and willful spirit. Even as he is defying you he is doing so politely. He is kind yet abrupt and I love him all the more for it and find it to be true of most people I love in my life, my two children and husband. To be autistic for them is to continue to be true to their nature despite the insensitivities and intolerance of others. To embrace their otherness is a daily act of defiance in the face of those that are unwilling to accept them.

Not that long ago I received a message from a reader who referenced an article having to do with the privacy of children and this person felt “mommy bloggers” like myself were sharing information that their children might find embarrassing some day. Let’s just ignore the misogyny and judgement and focus on the obvious flawed logic. The message implied that I was betraying their confidences and that they would resent me someday for doing so. As if it’s possible to raise a child and have them NOT be embarrassed by their parents. Yet part of me gave pause, questioned the validity of their argument, and the fact it made me question my own beliefs lead me to my decision.

Starting next month I will be moving all political and social commentary to a new site, Politely Defiant, at http://www.politelydefiant.com. All anecdotes and discussion about my kids will remain at Kelso Kids but I will be limiting access to the site to protect the privacy of my children. Not only because they’re now attending school (and can read!) but to allow them the chance to make mistakes and not fear what I share.

This will also give me the freedom to share opinions and discussion on Politely Defiant without fear of it upsetting those I love or causing conflict for them. And by “conflict” I mean them getting upset with me personally for disagreeing with their politics. I know I have lost followers in the past because of my beliefs and to that I say, farewell. Whether you are a loyal reader or a blood relative, I have not hidden my views and I won’t to please anyone.

Parenting children on the spectrum, being accepting of autism, is an act of defiance in itself.

Not that long ago, parents like myself were pressured by doctors and educators to institutionalize their children. To commit to parenting an autistic child was seen as foolish at the least and shameful at the worst. Such attitudes still influence society’s treatment of neurodiverse children and I do not deny that it hasn’t taken on a large part of my focus as a writer. For those of you that are looking for support and a safe place to share your experiences with neurodiversity then I welcome you to Politely Defiant. For those that want to find out when Owen figured out how to remove the heating grates, come see us at Kelso Kids.

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